Hypermobility Spectrum Disorder, daughter, aged 13
Options
Comments
-
Honorade said:@MaidMarion, how do you do social prescribing for your yoga class?Our Pilates is the same price than a gym membership. But I had to take a loan. I can’t work since my daughter’s birth, but the medical Pilates help.
You can also contact "Healthy Living" online at your council.
They can give you access to free pilates or yoga classes.
I am in a patient involvement group at the local surgery and just heard a presentation about it.
Bless -
Hi @MaidMarion - with hypermobility, your joints are then moving more than normal. This causes excessive 'wear & tear' so those with hypermobility can therefore develop osteoarthrosis (I have this in most of my joints). I'm far less hypermobile than I used to be, but, if you're assessed properly, you should be asked if you were historically more hypermobile.I'm fortunate in that I'm a physiotherapist (long retired), so know the right sort of exercises to do, which has helped retain my now somewhat limited mobility. Sorry you didn't find a physio understanding hypermobility.I had a bit of a fight with ensuring myself & children had the right diagnosis.....I found out what we had through my own research, then had to wait 2 & a half years to see a geneticist who specialised in Ehlers-Danlos Syndrome, & other connective tissue disorders to get this confirmed.As mentioned, a rheumatologist we were then referred to tried to overturn our diagnosis. It ended up with him asking me to correct mine & my son's letters that he was going to send to our GP after I'd emailed over a corrected version of the letter he was going to send to my daughter's GP. I wanted to ensure they had the correct diagnosis & medical information in case they needed it in the future.It's not been easy, & I didn't get diagnosed until I was 47. It shouldn't be the case, but EDS is still poorly understood by some Drs (& physios).Thank you for your kind words.
-
Hi @Honorade - in a way I should be shocked by your GP's response, & whilst mine have been great, several consultants have not; it's been a fight is all I will say.I had hoped that sharing the GP's toolkit with your GPs might help as they're often unaware of the diverse impacts EDS can have. This is the link I gave: https://gptoolkit.ehlers-danlos.org/ I hoped that making your GPs better aware of this might help.There is some useful info on the EDS website, tho some is also out of date. I knew the founder of the EDS support group, who gave me all the literature she had when we met, & supported me in raising concerns about some neurological concerns I had in a few of us with EDS. Sadly things are not the same since she retired.
Brightness
Categories
- All Categories
- 13.1K Start here and say hello!
- 6.7K Coffee lounge
- 70 Games lounge
- 386 Cost of living
- 4.3K Disability rights and campaigning
- 1.9K Research and opportunities
- 199 Community updates
- 9.3K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 771 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 590 Dating, sex, and relationships
- 363 Exercise and accessible facilities
- 739 Transport and travel
- 31.8K Talk about money
- 4.4K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.2K PIP, DLA, and AA
- 5K Universal Credit (UC)
- 6.2K Talk about your impairment
- 1.8K Cerebral palsy
- 871 Chronic pain and pain management
- 180 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.2K Mental health and wellbeing
- 317 Sensory impairments
- 819 Rare, invisible, and undiagnosed conditions